Friday, May 23, 2014

To Work or Not to Work – Employment and MS

(For those who receive these posts via email, this essay contains videos which can be viewed on the Wheelchair Kamikaze website – click here.)

Multiple sclerosis can be a wrecking ball of a disease, its potential effects threatening to impact virtually all aspects of life. Though the newest MS therapies offer many patients the hope of extended periods of good health, MS sufferers nevertheless find themselves constantly adapting to the challenges thrown at them by the disease. In addition to obvious problems such as those related to mobility and coordination, other more invisible symptoms can be equally problematic. Cognitive difficulties and extreme fatigue can be just as crippling as weakened and numbed extremities. Relapsing remitting patients never know if and when the next attack is going to hit; progressive patients must learn to coexist with their illness as it carries them down a slope of ever-increasing disability. The stress and uncertainty of chronic illness adds exponentially to the already demanding nature of modern life.

MS strikes most of its victims when they are relatively young, well before most would ever otherwise consider leaving the workforce and retiring. Unfortunately, MS forces this issue for significant numbers of those it afflicts. Despite the sunny image of MS often portrayed in the media, numerous surveys and studies have found that a high percentage of MSers find themselves forced into early retirement by the disease (click here, here, and here). Surprisingly, studies conducted in Europe discovered that as many as 50% of people with MS stopped working within five years of their diagnosis, well before many of them manifested obvious signs of physical disability. Instead, cognitive issues (such as memory issues and “brain fog”) and fatigue led many to early retirement. The findings of some of these studies may not be entirely accurate today as they include information on patients who became ill before the current crop of more effective therapies became available; nevertheless, MS related employment issues are a reality with which those afflicted with MS continue to grapple.

The prospect of lost jobs and reluctantly terminated careers can be one of the most frightening aspects of the disease for working MS patients. We live in societies that often conflate what we do for a living with who we are, and many find their sense of self intimately entwined with their work life. In addition to the obvious worries the potential financial impact of leaving the workplace can engender, the psychological toll of merely anticipating such an eventuality cannot be overstated. Patients often fear the loss of their jobs as much as the potential physical deterioration associated with the disease, and many hang onto their jobs for dear life, a sense of failure accompanying any ruminations of quitting the workforce.

I suppose in a strange way I’m lucky that I never felt wed to my career. Despite the fact that I managed to be successful in a highly competitive industry (TV and video production), I always felt some dissonance between who I was and what I did, as if I had strayed from my path and could never quite find my way back. Truth be told I just never loved working, least of all in some of the highly corporate environments in which I found myself toiling during some points of my career. There are those who thrive within the structure of a buttoned-down business environment; I felt as if I was being slowly suffocated. I enjoyed the titles associated with my working life (Producer, Director of DVD Production) much more than I actually liked the nuts and bolts of the jobs themselves.

Compared to many other patients, my disease struck hard and fast. My last day of work came less than four years after my official diagnosis. As my initial symptoms were all physical (increasing paralysis of my entire right side) and soon became abundantly obvious to all but the least observant, I made no attempt to hide my condition from my employers, who were gratefully quite sympathetic and supportive. They allowed me flexibility in my working hours and never gave me grief about time taken off for doctors’ visits or treatment sessions. My decision to go on disability was practically made for me, as the facility in which I was employed appeared threatened with closure and those in charge gave me fair warning that I could lose my generous disability benefits should the place shut down. Though I held on as long as I reasonably could, my creeping paralysis eventually made simply getting to work completely exhausting, never mind the physical toll of working a full day, and when the end came I felt more a sense of relief than anything else.

I spent the first two weeks of my “retirement” in full recovery mode, my body and mind finally able to take a few deep breaths, and though I did go through a time of existential uncertainty, I adapted quite well to my enforced life of leisure. At times I absolutely reveled in my newfound freedom to do whatever I wanted when I wanted to do it, albeit within the confines imposed by my illness. The support of my ever indulgent wife was (and is) beyond value, as I used my newfound liberty to pursue interests and penchants that had long lain dormant or ignored. Though some of the time since I left work has been spent on activities the less enlightened might deem frivolous (like watching lots of zombie flicks), some of my other endeavors hopefully have had some socially redeeming value (like this blog). Even now, with the grip of my illness growing ever tighter, I’m quite happy to be gainfully unemployed. Can’t say I’m having as much fun as I did earlier in my retirement, but freedom is precious whatever the cost.

I’m very much aware that my experiences leaving the workforce – from the days preceding my retirement to those after it – are hardly typical, but I’m living proof that the transition need not be filled with trauma and woe. Certainly, those with a deep affection for their work should be rightfully loath to give it up, and for many, even those with obvious disabilities, forced retirement can be held at bay for quite a while, perhaps even indefinitely. There are strategies and methods that can be used to prolong employment, particularly if employers and colleagues are made aware of the situation and cooperate in the effort.

Many wrestle with whether or not to disclose their illness in the workplace, and this decision can be highly dependent on the nature of the work as well as the culture and environmentin which the patient is engaged. A recent study found that those who do disclose their multiple sclerosis are more likely to remain working longer than those who do not (click here). Almost all developed countries have laws prohibiting discriminating against disabled employees, and require that employers make reasonable accommodations for those with disabilities. Once disclosure has been made, the psychological burden of keeping an illness secret is lifted, and that alone can ease the grind of getting through the day. Working hours can be made flexible, responsibilities can be shifted, and telecommuting can be a viable option for many. One of my good MS friends is a lady who relies on a power wheelchair to get around but nevertheless remains successful at her media sales position through a combination of fierce tenacity and the accommodations she’s worked out with her employer. A terrific resource for learning about employment accommodations for the disabled is the Job Accommodations Network website (click here).

Regrettably, not all working MSers are able to remain employed indefinitely. The decision to finally leave work can be one of the hardest faced by a patient. Financial considerations are of course a huge part of the equation. Here in the States, having private disability insurance certainly makes the decision to leave work much easier, especially since Medicare and Social Security don't kick in until two years after long-term disability status has been established, and for many these programs only cover a small fraction of what they were previously earning. MSers in the United States should, without question, max out on any private disability insurance offered by their employers. Other countries with stronger safety nets at least partially alleviate this consideration.

Financial considerations aside, ultimately the decision to leave work because of MS disability often comes down to not only whether or not a person is still mentally and physically capable of completing their job requirements, but also soberly assessing whether the daily grind of working is taking a deleterious toll on the patient and negatively affecting their physical well-being. It’s incredible what people can endure, and the insidiously incremental nature of MS disability can often mask the multiplying effect the toil of struggling to stay employed can have on a body battling the illness.

Despite my obvious physical problems, I didn’t become completely aware of just how negatively working was affecting my health until after I had taken my leave. Only then did I become fully conscious of how physically and mentally exhausting my continuing to work had become. Most of the first few weeks of my retirement were spent sleeping, my body gratefully soaking up the rest it so desperately required. After that much needed period of decompression, I started the slow but ultimately gratifying process of redefining myself, in a sense becoming reacquainted with parts of me that hadn’t seen the full light of day since my youth. Happily, the end of employment is by no means the end of life itself, and indeed reclaiming time that would have otherwise been spent working affords one the opportunity to chart a new course, perhaps one even more suited to the individual than the one so grudgingly given up. It’s often said that every exit is an entrance, a truth I found embodied by my transition out of the workforce. I always said I didn’t live to work but worked to live, and now I can simply live.

That said, I know how important and meaningful work can be in the scheme many people's lives. The following videos, produced by the National Multiple Sclerosis Society, provide valuable info and insights on strategies for managing workplace issues associated with MS, and maximizing the ability of patients to continue working…

25 comments:

Marc, this is an excellent summary of a very complex issue. I would also add another factor that complicates the decision - the issue of availability of medical benefits. First, when a patient is approved for Social Security disability he/she must wait two and half years before qualifying for Medicare (six months from Social Security approval to receiving benefits, and two years from receiving benefits to qualifying for Medicare). There have always been options for bridging that gap, such as COBRA plans or other private insurance, but these are typically very expensive. With the implementation of Obamacare, there are more options, but I'm not sure of their cost. I simply don't understand the two-year waiting period for Medicare after you start receiving Social Security benefits. It seems cruel, and it adds to the difficulties of people who are already in a difficult position. Then, what if the person with MS is the primary breadwinner in the family – the only person who has medical insurance through their work. So the issue becomes not only medical care costs for the MS patient, but for everyone in the family. You know who doesn't have to worry about this? Canadians.

Mitch, thanks very much for the comments. I agree 100%, so much so in fact that I added a couple of lines about this to the essay. The problem is that government disability programs vary widely from country to country, so it's difficult to make blanket statements regarding this issue. The two year gap between between achieving full term disability status and Medicare and Social Security kicking in here in the states is definitely a huge problem. So too is the labyrinthine process of applying for these programs. Perhaps perhaps these issues are fodder for another post…

i found it very odd that my leaving work was referred to as "retirement." i was crushed that i could no longer work, and 5 or so years later, i still have not found a fulfilling use of my time. sometimes i think, "hey, i could still work, why did i quit so early?" then i have a day, like today, where i can barely keep my head off the desk, and i realize i made the right choice. if only disability insurance and ssdi would combine to offer a living income.

Yes, "retirement" is something of a euphemism. It's amazing how language can be used to dance around issues that make people uncomfortable. Sorry that you are having a rough time finding for filling ways to fill your days. Wish I had some magical advice, but everybody's situation is so different that what may sound like wisdom to one comes off as mere drivel to another. All I can really recommend is that you give yourself the chance to explore any viable possibilities that spring to mind, regardless of how monumental or trite they may seem. Contentment can be found in the most unlikely of places.

As for the problem of being able to derive a livable income, that truly is a predicament. I got extremely lucky in that regard, and my heart goes out to others who are less fortunate. Being sick is bad enough, but having to struggle to be sick is simply obscene.

Disability and finances are locked in a death grip, matched only by the chokehold forced retirement has on self esteem, and both issues are related. I retired in my 30s. Luckily, I was treated well by my former employer and, therefore, the hardship of the Medicare waiting period Mitch mentions above was mitigated somewhat. Now, many years later, I can only say that having both Medicare and disability income could well be the reason why I don't despair. I cannot imagine living without such benefits. Yet, I know there are many who do. I no longer dwell obsessively on the opportunity costs of foregoing the highly paid career I used to have. That would only make me angry. So I have focused on other things like my writing to create meaning in my life. But, does that make me feel any friendlier toward MS? Hell, no! MS is thief, scoundrel, and asshole. And, that's just me being polite.

Hi Judy, yes, you are being very polite. This blog could quickly become X-rated if I gave full vent to my feelings about MS and what it does to people. I too sometimes fall into the trap of wondering what might have been had I not been forced to stop working, even though I never loved working. There's always the possibility that I would have wound up doing something I did love, but I've found that if there is one sure path to despair it's playing the "what if" game. Sometimes hard to avoid that pitfall, though. Your writing has brought comfort to many others, and in that you should find pride and contentment. And when things get just a bit too much to take, I've found that screaming "fuck you" at the top of my lungs to no one in particular seems to bring the boil down to a simmer…

Sorry Marc because I made first and I really think about afterwards. I have copied your last post and I put it on the page of MS group of my town to share with MS fellows....In seocnd thought I realized for myself I would have to ask you if you allowed that....Your posts are to me so wonderful that impulsively I have wanted to share it with my illness friends. For me it is always a pleasure to read your posts, because they are simultaneously informative and friendly too. Sorry my disastrously actionAna Maria

Hi Ana Marie, please, no apologies are necessary. Feel free to share my posts with whomever you want whenever you want. I'm flattered that you would want to pass along my essays to your friends, and once I post something to the blog consider it there for the taking. Except my photos, of course, which I'd at least like to get some credit for if people want to use them elsewhere. Hope the disease is treating you kindly…

Marc,As you will remember, George really enjoyed his work, making deals, keeping the customers happy as well as the social aspects of jokes, food and fun hanging with all the the staff at his job. He hung on until he could no longer sit up for any period of time. Filing for disability and finally leaving his job was a moment of great distress, another loss to be mourned, another acknowledgment that he could never return. It was not that his work gave his life purpose, but his joy was to be productive and creative. Progressive MS added another nail in the coffin each week, each month. As he said in his blog, "MS is a thief". Thanks for discussing the topic, another one that healthy people take for granted.Hilda

Hi Hilda, yes, there is so much that healthy people take for granted. And I was one of them, blithely living my life in blissful ignorance of how un-simple the simple pleasures actually are. I remember full well how mightily George struggled to remain working, he really put up a hell of a fight. MS is the worst kind of thief, not really sure there's a word to fully describe it.

Well, I think the website I referred to in the essay, the Job Accommodations Network, is a great place to start. You might also want to contact the National Multiple Sclerosis Society for more info. I'm pretty sure they have programs designed for employers who want to help their disabled employees…

HELLO MARC,I WAS READING JEFFREY N GINGOLD'S BOOK FACING THE COGNITIVE CHALLENGES OF MS TODAY! and your topic is so appropriate. It took years before i was officially diagnosed with MS so I missed the opportunity for treatment. Then I had SPMS. I was really troubled with memory and fatigue symptoms which did not go safely working in special care nursery. Fellow nurses did not believe me when I attempted to explain. My mother in law is a former nurse who puts all my symptoms as my imagine and is cruel. recently someone compared my comment to the Jerry Seinfeld show, if they only knew. I miss work so much for the camaraderie. My LTD is not indexed to cost of living for 16 years and benefits are eroded by health authority in BC, Canada. Family and friends have deserted me because of my SPMS and cognitive problems. I don't want to look after you! But I keep trucking so to speak. Take care to the MS family. Love this wonderful inspiring read............thank you.

Hi Michael, you touch on a number of very important topics in your comments. First of all, the "invisible" nature of cognitive problems and fatigue make it extremely difficult for those who don't experience them to truly understand the magnitude of the impact they can have on an individual. "Fatigue" is such a weak word to describe the overwhelming symptom it labels. Sounds like something a little nap should take care of, right? Well, as you and I both know, that's simply not the case. Sometimes people say the cruelest things with the best of intentions, you just have to try to shrug it off and learn to find their ignorance amusing, if at all possible. The problem of finances for those struggling with disability is heinous and intractable. They say a society should be judged on how it treats its least fortunate members. Using the criteria, much of civilization is a dismal failure… On that happy note, take care, wishing you the best…

This article piqued my interest in the latest products available on the market, and I found a great resource here: http://www.medicalexpo.com/medical-manufacturer/wheelchair-2081.html. Hope this is a useful resource for you other readers.

Hello Marc I asked a MS nurse why MS Societies did not provide more information about SPMS to the Canadian public. "We do not want to scare the newly diagnosed!" So my concern is how long have the medical profession known about the cognitive problems? Were they afraid to scare us? I forgot to mention this in previous comment. Thank you for your response.

Oh, don't worry, the professionals have known about cognitive issues and MS for decades and decades. I can understand not wanting to scare newly diagnosed patients, but being fully armed with knowledge is the only way to make proper, informed decisions about treatment choices. The concept of "protecting" the newly diagnosed by keeping them in the dark is utter foolishness…

I just found your blog after doing some research on Tecfidera, and I'm so glad I did! For years I have been a "denier," not wanting to participate with anything MS related or associate with the notion of disability, even though MS has had an obvious impact on my life since 2001. After the first obvious flare-up and diagnosis my symptoms have been invisible. I struggle with "brain fog," memory loss, and crushing fatigue, but am otherwise relatively unscathed. I am physically as active as possible (thanks to a radical MS induced paradigm shift) and in fact, most people scoff at the mere suggestion that there is anything "wrong" with me. Yay, right? Although I am deeply grateful that my physical symptoms are minor-league, I have found it increasingly frustrating to navigate the social and financial waters of dealing with the silent symptoms. The issues of working, disability, perception of disability, and their financial ramifications have been foremost on my agenda lately and it is nice to read well thought out, well written, logical discourse with enough snark, irreverence, and humor to remind me that its not all depressing. You are a gifted writer and I thank you for providing a concise synopsis of info and opinion. Keep on being awesome.

Lola, thanks for your very generous praise of my blog and scribbling skills. After interacting with dozens if not hundreds of MS patients, I've come to understand just how disabling "invisible" MS symptoms can be. When healthy folks look at people like me, our disabilities are on open display, and they sometimes overcompensate to the point of treating us as somehow diminished in the humanity department. Those with cognitive and fatigue problems have the opposite problem, the healthy seem to often refuse to acknowledge that these are problems at all, which may be an even more boneheaded reaction then the ones more physically disabled patients experience.

I suppose one has to adopt a "dammit torpedoes" mentality and learn to do what's good for you, regardless of what others think or do. Much easier said than done, I know. At times you might wind up appearing to be a bit selfish, but we know better than that, don't we? As I've said often on these pages, it helps to occasionally step back and recognize the absurdity of it all.

Your topic is timely for me. I have been wrestling with 'retiring" for the past 18 months and your article reflects many of the issues one faces. My MS is obvous at this point. My employer has been increadily supportive, but I am at the point that there isn't much more that can be done to accommodate me. No matter what the accommodation, I am exhausted by the end of the day. I do not have the energy to cook, much less do many of the other tasks of daily living, such as errands. Luckily, my husband usually doesn't mind cooking and we're in the finanical position to afford to have someone clean our house.

I worry about finances. I am the primary breadwinner and my husband is on my health insurance policy. Although I do have long-term disability insurance (LTD) through work, the difference between the LTD and what we will have to pay for health insurance (now that we can get it, which is another concern - will we be able to keep it) is substantial. We have planned for this time through careful investments and luck, so my retiring won't be devastating. I am forturnate in that I am older (59) and my MS was a long slow deteriation until the last few years.

I recognize that my reluctance to retire is not really financial. I don't want to give into MS. Quitting work feels like failure to me. Yet, I want time for me. I want to be able to do things other than working, sleeping, and eating. Your article helps me keep not working in perspective. It's okay to have me time. Thanks.

Well, you're very welcome. I fully understand how quitting work might feel like failure, but given your long-term struggles with the disease, I'd say you've been quite triumphant! If and when you do "retire", I think you'll be surprised at just how exhausting your efforts to remain working really have been, despite the fact that you already acknowledge this. Add the mental stress of contemplating all of this crap to the physical stress of working through your disease, and you have a recipe for out and out exhaustion, the extent of which won't become readily apparent until after you leave the workplace.

The question of finances is a big one. Before you do go ahead and "retire", make sure that all of your ducks are in a row. There are various ways of paying for your disability insurance (pretax or post-tax), some of which greatly lessen the tax burden on the income you'll derived from LTD. Also, don't forget that most LTD policies don't kick in for six months after retirement, so you'll have to live on short-term disability during that gap. If you have a competent human resources department, you should certainly consult with them; if not, make sure you do your due diligence on the web.

Wishing you the best, and assuring you that there is indeed life after work…

I stopped employment about one year ago, probably three or four years beyond when I should have. It was a matter of self pride/worth but it reality I was holding on for the pay and benefits. I am able to help with my wife's business and otherwise enjoy not putting myself in the situation of using so much of my limited resources for the sake of the job. It wasn't worth it anymore.

Hi Marc, have your heard of the MTHFR gene mutation? I also (may) have ms, I've been recently diagnosed but I don't really believe it. So still searching for the cause. Thank you for your blog, just recently discovered it from an online ms friend. I love all your rants and raves, videos and pictures. I think you are incredibly brave to travel the streets of NY in your chair.

Dr Ben Lynch is the expert on this gene mutation - check out his website for more info.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...